Handy Work

In case you haven’t guessed by now, I’m not a handy person.  Neither is Beloved. I’m sure we can manage the odd minor fix here and there and IKEA furniture isn’t beyond us, but we aren’t ever going to renovate a house alone.

By some people’s  standards we are lacking.  By certain cultural norms Beloved would be considered less of a man for the handy skills he doesn’t currently have.  He could cultivate some, if he wanted to and had time for it.  I suspect the same could be said about myself.

But there is something to be said about being able to pay someone else and know the job has been completed correctly.  There is also something to said about leaving that nightmare to someone else.  I guess for us it is a peace of mind, although Beloved would tell you that honestly he is just doings is best to contribute to the economy by hiring someone.  Does this make us snobs?  Does it make him less a man or not as macho?  Does it make us less able to survive?

Does our version of handiwork count as that?  Be it our research, teaching or writings?  Or do these very thing makes us snobs?  Overly privileged and out off ouch wit they rest of the world?

Invisible Superhero Outfits

The problem with a mostly invisible illness such as lupus is that you either end up living  a lie to try to be normal or you feel like you are being pulled into a strong undertow.

For me, it seems its best to appear normal to the rest of the wo world.  I don’t know when I made this decision, I only know that I’ve spent a good portion Of my life ignoring fevers, pains, swelling just to appear the same as healthy people.  I’ve  stayed away from hospitals just to appear normal.  I’ve stayed away as if to prove to myself I’m okay.

when you know you will be taking drugs like chemo, anti-rejections and steroids for your life it’s overwhelming.  So I’ve streamlined meds, opting for quality rather than quantity of life. An easy decision for me, not so much for those who love me and care about me.

THe  problem with having an invisible illness and trying to appear healthy and normal is that it’s almost a full-time job.  Make up to hide a rash if lupus is being truly dreadful.  Artfully arranged hair or hats and scarves to hide thinning hair.  Clothes to hide the needle marks and what have you.  Just add a huge dash of stubbornness and a heaping of pushing beyond wha gone should and you are good to go.

I know this because I’ve lived this way for a long time.  It’s exhausting and yet I do it because it’s important to be seen as a person, not an illness.  That’s my flawEd logic.  Usually it works enough that most people don’t equate lupus with me because I don’t want to be my illness.

Lupus makes me feel weak, helpless, useless, hopeless and lost.  So into what I ca to pretend and fool lupus into not knowing how it affects me.  Imagine my surprise when after a day where lupus was winning this battle Beloved held my hand at the hospital and told me that I was some kind of superhero.  In his eyes I wear a cape, tights and whatever else.  I do battle with the evil lupus and still find time for him and other  pursuits of life.  He told me just watching me can be tiring, and yet I d it and still find a way to do things he wants to.

I guess my cape and tights etc. are like my illness, invisible.  Hopefully I never forget that least I head out the house in my superhero outfit and no clothing! 😉

Irony Massaged

Isn’t it just the essence of irony that you get a massage to ease your pain, but then next day you may still feel like you were run over by a truck or so?  The therapist will say it’s because I didn’t drink enough water before the massage or after.  But I’ve drunk enough water to fill a small ocean or such.

I felt like I needed a massage just ton get rid of the pain from te massage I already had.  Beloved suggested what I needed was something nice gentle for a second massage, but the reality of it all is that to be touched seemed to be a bit too much.

Relax, Beloved suggested as he headed out the door, probably to get away from me whining about then win from a therapy that was supposed to remove pain.  I wondered how an erosion could relax after being run over by a truck or two.  Relaxing does not seem to be the thing to do.  The pain seems to ensure you can’t get comfortable enough to relax.  Or is that all use in my imagination?

listen I’m all for irony, three world needs irony, but just not in this way.  I don’t need, nor do I think it’s cute, a massage to recover from a massage when im in too much pain to be touched!  That, in fact, may Ben  case of pushing irony too far.

Now if anyone managed t get the details of the trucks that hit me, that would be great.  Because from down here on the road a bit squashed, you can’t really see that plate number.

How Does He Do It

He was sleeping soundly, not a care in the world.  I’m not sure what he’d have to worry about, but watching him sleep, I suspected that he was sleeping the sleep of an innocent.  Now and then he’d stretch or wiggle his legs and settle back into his rest.

A part of me was jealous of his easy rest.  Another part was grateful that he’d found sleep because it meant I’d be free to move elsewhere without worrying about him following me and needing to be settled again.

So I tip-toed from my room to where Beloved was sleeping and promptly asked Beloved if he was sleeping!😳  of courses he disn’t answer, so I poked him awake.  This way I could crawl in beside Beloved and listen to his heart beat.  There is something wonderful and reassuring about listening to Beloved’s heart beat, especially after he has been  sick.

But of course the dog knew I’d left him, he knew where I was and he felt the need to join us.  Evidently we didn’t notice right away so he voiced his presence, loudly.  Loud enough to wake the dead, and since neither of us was dead it was exceedingly loud.  I suspect he planned that all along.  And then he settled down to his deep, easy rest while Beloved and I tried to settle back down.  How on earth does the dog how to do all this?

You Just Know

I’m used to dragging my sore, failing body arounD in various ways so as not to be noticed by people.  I do this partially because im not a fan of then Trenton or pity and also because I think by appearing normal I am normal.  Watching Beloved drag an injured leg bothers me immensely.

Beloved  is fairly typical of most men I know in that he will pretend everything is okay when it isn’t.  He doesn’t easily admit to pain or injury, but after two days of a limp getting progressively worse, there was simply no way to hide it any longer.

He had been out with the dog on a walk when his shoelace became untied and as he knelt to tie the lace, the dog saw something to grab his attention elsewhere.  Beloved’s knee disagreed with this demand for sudden movement and he thought he twisted his knee.  No big deal.  Except his knee didn’t get better, in fact it got worse.

The knee was swollen and red and hurt more than he’d like to admit.  When he could no longer hide this, he told me what had happened.  When he showed me the knee in all of its throbbing, swollen redness.  The knee that failed to fully bend or straighten.  The knee, that once we saw the doctor and had a scan, had substantial tears and needed to be braced and rested.

And thus Beloved started to use crutches to get around, or when in the house to not hide the limp and actually drag his leg.  And watching him struggle reminded me of how I struggle every day, both with the failing limb as well as the struggle to appear normal.  I was grateful he didn’t have to fake being well because it is truly exhausting.  With each movement I winced for him.  He assured me it wasn’t that bad, but when you’ve been there yourself you just know.

not that any of this means I baby him, he wouldn’t stand for it any way.  But I do understand how hard it is and how sometimes you just need help with your socks and shoes.

Myth of Culture

According to a friend of mine, every person in North America has a swimming in their yard.  The really wealthy people have indoor pools.  Of course my friend forgets that not all of the continent has such lovely climates.  There are places here where it is below freezing far longer than it is above.

I guess in a way my friend is correct for we have a swimming pool in the back.  Granted it isn’t a sunken pool, definitely not an infinity pool either.  It is, however a pool.  Okay so it’s a kiddie pool and the dog is the one who uses it,  but still, it’s a pool and it’s in our yard.

This same friend assures me it’s always sunny and beautiful in North America.  According to her, it never rains too much, or is too windy.  I have a feelings she’s never heard of Chicago! 😉  she always seems to think tornadoes are merely a means of cows getting to see a different part of the country.  I’ve taken pictures, showed her news footage, but she believes we all live in Hollywood or Florida.

Live learned you can’t that type of person’s mind.  They are set in their beliefs, right or wrong and the myth of all things warm, beautiful and swimmingly are found in North America.  I though perhaps with the gun violence and such she’d have changed her mind, but evidently not.

I know I shouldn’t do it, but I couldn’t help  myself as I countered with, doesn’t everyone in Switzerland know how to yodel and have a cowbell hanging outside their place?  Of course I said it all very tongue-in-cheek as I don’t actually believe that.

It always amazes me that there are some ideas and beliefs, nay myths, about a group of people or country that is hard to let go of.  It seems to have been welded into our very being and to remove it requires a skillful surgeons hand.  I suspect toast of the reason fo  this is that we’d really not let go of that myth.  We want to hangs not that notion much like a cotton candy cloud because it’s innocent and comforting.


In The Books

From an early age you could find me with my head in a book.  However finding my head in a book because I fell asleep while doing some research isn’t typical, not for me.

The worst thing about falling asleep in a book isn’t the sore neck you wake up with, although that is right up there.  For me the worst thing about sleeping In your book is when the text rubs off on you.  I mean learning by osmosis is one thing, but trying to absorb the knowledge from the very ink through your skin is another thing!  Frankly it doesn’t work, trust me I speak from experience!

Beloved would tell you the worst thing about sleeping in your book is waking up with the pages stuck to your face and words blurred beyond comprehension.  Beloved used to sleep in his books a fair amount because besides being a full-time student he held down two jobs.  He said he never figured out whet those blurred words were nor did he feel any smarter for sleeping in his books.

This is where I feel bad for the modern student, the student of then initial age.  Fall asleep on your tablet and you may break a the tablet, but you won’t be any closer to the work.  You won’t wake up with smudged ink on your cheek.  The pages won’t be stuck together with sweat or drool. And somehow this seems like am or ribald loss for the modern student!

I’d write more, but my sore neck is screaming for a heating pad and I need to figure out what this line is saying.

Whimsy of Gravity

The problem with Gravity is that it sucks and weighs you down.  It pins you and holds you down when all you want to do is float around.

If not for Gravity, I’m pretty sure I wouldn’t fall down.  Either that or I’d float along in the clouds, then soft,fluffy, wet, heavy clouds.  On second thought, think I will pass on this is floating in the clouds.  Perhaps if we could have softer ground I wouldn’t mind Gravity so much.  besides, if Gravity were to really do its job, wouldnt all the wrinkles in our faces etc just be pulled down to our feet!? 😉

I’m not sure why Katy Perry insists Gravity hurts because it, in and of itself, doesn’t hurt at all.  What hurts I  when your soft, delicate,  body comes into contact with the hard, unforgiving ground.  Gravity only brought you to the ground!

Shopping Woes

I don’t often do shopping for fun.  I don’t find shopping to be a pleasurable chore, unless it’s books, coffee or technology.  These things I enjoy doing, they aren’t s chore at all and now and then time can slip away from me before I notice it.

Shopping for groceries is not something I enjoy.  The whole thing is a pain.  You start off with people milling about aimlessly.  These people seem to always know exactly how and when to get in my way.  Add to the mix the fact that there is always one thing them tore won’t have that you just need for a meal.  Now toss in upset children, wet or limp produce, meat that bleeds out of its package all over you and you can see my fun.  Of courses now you have to stand in a line to pay for these things.  Most stores have now tricked us into self checkout where it seems faster. We don’t get a discount on our purchases for doing the work ourselves, but we see a shorter line and off we go.

Clothes shopping?  Even more fun. First try and find something you like or don’t mind.  Then try it on and see if it fits, if not scour the racks for the same item in different size and repeat process as many times as needed.  Are we having fun yet?  (Didn’t think so!)

But get me into a bookstore and its all great.  I will spend hours there and lineups are no big deal.  Book people I get, they make sense.  Same with technology people.  And coffee people, well they tend to form long lines and for the most part it’s okay.  It isn’t okay when the person orders a million coffees to go or one coffee with a million variances to it.  Those people should be in the grocery store, or one of my levels of hell!

Too bad I can’t clothe and feed myself with books and technology! Surely I’m not alone in my shopping issues!

Dreaming on the Rails

I’ve alway imagined riding the rails…a hobo type of life.  Not that I’d ever do it, I am too wedded to my creature comforts, but I’ve always thought how liberating it would be to just ride the rails.

This type of lifestyle has been romanticized by books and movies alike with a sort of nomadic freedom and soul-satisfying lifestyle.  The reality is a bit different of course.  Sure in the movies you get on and off train at will.  Most of the people you meet living the same style are willing to help you out or ignore you.  You have amazing adventures and answer to no one.  The reality is that danger is everywhere, trust is low and there is always the fear of law.  Others like you may rob you, push you off the train or kill you.  The chances of just jumping on and off is there, but the obstacle of the challenge of doings this without going under the train etc. is rather daunting.

I guess there is the freedom of not answering to anyone, the only clock you worry about is that of the train coming and going.  But there is the worry of foo  and shelter as well so I won’t see the country.   Not the way, but perhaps with paid care so I can have some of those creature comforts I’ve grown use to!  So you see I’ve not given up on my imagined rides, it’s just that if I do them in reality, they will be a bit different.